hi is anyone on here that has graves disease an... - Thyroid UK
hi is anyone on here that has graves disease and either had radioiodine treatment or surgery to get the gland removed? need help on deciding
Yes I have had both, not sure anyone can help with decisions as only you can decide. You will end up Hypo which ever you choose, with RAI it may not happen immediately whereas surgery it will.
If you don't mind me asking how has it effected you? many thanks.
I had a partial op in my teens and was fine, no meds needed, then in my 40s I had Graves again, as before it couldn't be controlled with meds so I had RAI, no after effects of the actual treatment whatsoever, I went hypo within a few weeks but have been fine on Levo since ( now 58). Ok you need to jiggle with doses now and again but it's way easier being hypo than hyper, for me anyway. My sister had a total op in her teens and she has never had any problems since, she is now 54 years old. You will mainly here the bad experiences on the forums as everyone else who is fine is busy getting on with life, it's not all bad !
I have Graves Disease and now Hashimotos, TED and many many other horribly illnesses, I was persuaded to have my thyroid removed in June this year, and now my life is unbearable, I am a totally different person, I have lost my friends, most of my family and my son is so ill worrying about my health problems he is a total mess too, and I've only been able to see him a few times since my operation as he lives miles away from me. The last time I saw him we had a massive row, and we both are now being looked after by our partners after we both have had breakdowns. I long too see my son again, my heart is broken...and I am so poorly it would be easier just to give in completely but I WILL NOT let this horribly debilitating illness win, I will be happy and I will enjoy the retirement I have worked so very hard for all my life. I love my son so very much and I miss him every minute of the day, my heart is torn apart. Please please think very long and hard about the butchers taking away the gearbox of your body, if only I had known......xxxx
I am so sorry to hear that, are the other illnesses as a result of the surgery? I am happy to hear that you are pushing through and not giving in!! Thank you so much for responding and if you ever need to talk I'll be here, you are so strong, thank you. xxxx
Thank you for your caring reply. The Graves Disease is the reason for my many illnesses it has been attacking my body most of my life, I only found this out though researching it all on the internet, my doctors have never put two and two together.. but I have studied it very thoroughly, with lots of help from this wonderful web site and the links they give us. Yes I am now extremely strong, and with all the help I get from these lovely caring people I'm getting much better all the time, I have managed to get enough t4 and t3 meds for the next 2 months so onward and upward, I am due to have my gall bladder and gall stones removed soon , and my bottom is hopefully getting 'sorted' this Thursday. I'm taking lots of supplements for my silly stomach and hopefully that will improve after my operations. And then hopefully my silly brain will settle down again, it's been a long old haul but I'm hoping by Christmas all will be much better.... But I must say I still wish I hadn't had my Thryroid removed I was much better on Carbimazole but my Endo was very concerned as they couldn't stabilise my levels........my heart goes out to you.. And I wish you all the very best.. We are always here to chat and support you guys ... I spend many hours just reading everyone's questions and posts, and following the threads .. It's such a horrible illness.. Anything to do with the thyroid is so hard to treat, the doctors seem to just give in and pass the book.. I have learnt to stick up for myself and I've really had to toughen up.... My son will come back to me eventually,.... I know, I just have to wait and let him heal in his own way, he is seeing a counsellor, I believe the root of his problem is that he doesn't see me enough so he always thinks the worst ..plus ..he is terrified he has Graves Disease lurking and ready to attack him too, ..as he has quite a low immune system too, he seems to catch every ailment going around...just like I did when I was younger and I presume in the early stages of the disease. I truly believe I was born with it, and it was lurking in the side lines and really took control in my mid forties, no one puts two and two together until it attacks the thyroid gland, but I have suffered from anxiety and depressive moods, migraines and cystic ovaries from my twenties...I'm feeling much better today, at least I'm retired now and don't have the stress of having to go out to work everyday, I can live at my own pace and rest as much as I need too, I just wish my poor stressed out hubby would retire too, then we could enjoy our life at our pace,... but he's not ready to retire yet, ...when he is ready, we hope to retire to North Yorkshire nearer to my sons hometown but until then I'm stuck in a place I don't want to be.....if I was well enough to live on my own I would move straight away to the place we have chosen but it's not to be ...yet... xxxx
It's okay! Yeah I think im going to have to do a lot of research on the internet as the doctors didn't really tell me much. I hope all of the operations etc go very well! And that you will feel better soon. I'm sure he will come back after he's seen the counsellor and sorted himself out :). Well I hope that he retires soon so that you both can move and get closer to your son. I'm sure everything will work out in time. thanks again. xxxx
Hi Nuttytish, sorry to hear your story. Is your doctor on board, helping you?
My 'doctors are all arrogant so and so's' but at least my Endo has now allowed me some t3, but last time I saw one of my 'doctors' all he could do was tell me off for not taking my anti depressants....say no more ...I stormed out...
Had to cancel my camera up my botty appt due to a raging sore throat, so I have to wait until my new appt in early Nov....grrrrr
i had graves 7 yrs ago and had mine removed and ive never been the same since i now have arthritis and fibromayalgia if i had known how much it would have changed me i would never have had it done, saying that many people are fine after. I now take 200mg of thyroxine a day along with many other pain killers and anti depressants i cant go anywhere due to arthritis in my feet.
Hi,
I'm no doctor, but as that is such a big decision, I would recommend you do more research, if you haven't already, maybe read Stop the thyroid madness book and Dr P's book, there is also a yahoo group about iodine, I'm not a member yet myself, but there might be a source of info for you among the memebers, it's good to have different view points and then you can make your own informed decision - I still don't get it at all why one's thyroid needs to be destroyed either with radioactive iodine or by removing it and then the patient becomes hypo with all that it entails, eg there must be a third way. Some while ago someone posted here a link to a youtube lecture by Dr Sherry Tenpenny about thyroid (and iodine, zinc, selenium) - it was very good, if you have not seen it I'd recommend it to you.
My TSH was so low a year or two ago that it could not be measured. I had the 24hr urine test which showed that I was very deficient in iodine. I started supplementing, but then another dr told me to stop it, I did as I was told and as a result developed multinodular goitre..I have resumed to take iodine this year since April, and as soon as I started supplementation my waisting away like a hyperthyroid (unintended weight loss, looking anorexic) stopped, breasts 'filled up' and throat area started to feel better. I just got my thyroid tests (TSH, Free Thyroxine, Free T3, Thyroid Antibodies - Thyroglobulin antibody and Thyroid Peroxidase Antibodies) and everything seems fine based on the results in my view. I have been cautious to rule out Hashimoto's as then supplementing with iodine might not be suitable - although I have seen differing views on that one as well.
I hope this gives you some ideas.
Good luck and best wishes,
PS: Graves' disease is an autoimmune disease. It most commonly affects the thyroid, frequently causing it to enlarge to twice its size or more (goiter), become overactive, with related hyperthyroid symptoms such as increased heartbeat, muscle weakness, disturbed sleep, and irritability. It can also affect the eyes, causing bulging eyes (exophthalmos). It affects other systems of the body, including the skin, heart, circulation and nervous system.
For that reason, I would recommend the following link - huffingtonpost.com/dr-mark-...
Exctract below from it:
Nine Steps to Treating Autoimmune Disease
1. Check for hidden infections -- yeast, viruses, bacteria, Lyme, etc. -- with the help of a doctor, and treat them.
2. Check for hidden food allergens with IgG food testing or just try The UltraSimple Diet, which is designed to eliminate most food allergens.
3. Get tested for celiac disease, which is a blood test that any doctor can do.
4. Get checked for heavy metal toxicity. Mercury and other metals can cause autoimmunity.
5. Fix your gut. For details, see my blog on irritable bowel syndrome.
6. Use nutrients such as fish oil, vitamin C, vitamin D, and probiotics to help calm your immune response naturally.
7. Exercise regularly -- it's a natural anti-inflammatory.
8. Practice deep relaxation like yoga, deep breathing, biofeedback, or massage, because stress worsens the immune response.
9. Tell your doctor about Functional medicine and encourage him or her to get trained -- go to functionalmedicine.org for more information and to get a copy of the Textbook for Functional Medicine.
This doctor recommends one treats the underlying causes of one's illness and one will begin to experience if not vibrant health at least progress, like in my case, although I'm still on the road to recovery. (My underlying causes are lyme disease and its co-infection bartonella henselae (from a tiny poppy seed size nymphal tick bite) that affect the whole body and among other things often cause thyroid problems, and problems with adrenal function, hypotalamus, pitutary gland, deficiencies etc etc.)
This is an excerpt from an article by Dr Toft who was President of the British Thyroid Association:-
5 Patients with hyperthyroidism often ask for advice on drug treatment versus radioiodine therapy. Can you summarise the pros and cons of each?
The three treatments for hyperthyroidism of Graves’ disease – antithyroid drugs, iodine-131 and surgery – are effective but none is perfect.4
Iodine-131 will almost certainly cause hypothyroidism, usually within the first year of treatment, as will surgery, given the move towards total rather than subtotal thyroidectomy.
There is no consensus among endocrinologists about the correct dose of thyroid hormone replacement so patients may prefer to opt for long-term treatment with carbimazole. Standard practice is that carbimazole is given for 18 months in those destined to have just one episode of hyperthyroidism lasting a few months.
But there’s no reason why carbimazole shouldn’t be used for many years in those who do relapse. Any adverse effects such as urticarial rash or agranulocytosis will have occurred within a few weeks of starting the first course.
Iodine-131 treatment for toxic multinodular goitre is the most appropriate choice as hypothyroidism is uncommon. Surgery would be reserved for those with very large goitres and mediastinal compression.
Once hyperthyroidism has developed in a patient with a multinodular goitre, it will not remit and any antithyroid therapy would have to be lifelong.
So his approaches are ANTIthyroid drugs, radioactive iodine=iodine-131 which is sort of opposite to non-radioactive iodine, and partial or total surgery, all of which, as far as I can understand, seem to aim to halt/stop thyroid activity as much as possible.., I just don't get it.
I had Graves' disease in 2005 and spent time on Carbimazole before being encouraged to have a total thyroidectomy. I wish I had known then what I know now. My health is ruined, I cannot get the dose right of any medication or combined medication to give me back the person I used to be. I believe there is no correct treatment available yet to replace one's thyroid. Is there no alternative to surgery or Radioactive iodine in your case? Dr Toft believes it is possible to use anti thyroid medication for much longer than the 18 months normally given. Why not delay it for a while and see how things go? Do hope you come to the right decision for your own needs. We can only tell you our stories and the way we have been affected.
I'm afraid not they are the only 2 options that my doctor has given me, I have been on carbimazole for the past 4 years, stopped and then I relapsed so I have been put back on it, i appreciate the help and the story thank you.
Sounds like we are in the same boat, just started T3 10mcg with Levo 50 mcg was on levo 100mcg before and my life was hell on earth, now I'm slowly on the mend, hope you are too xxx
By the way I'm taking lots of other meds too and adjusting those too, due to my insistence and researching my health is now is my hands and not the rubbish doctors I have seem, if I had taken notice of those arrogant quacks I would be dead and cremated by now xxxx
Keep fighting and knocking down those big brick walls ...big hugs everyone xxxx
Hey, I had bulging eyes so wasn't aloud the radioactive treatment. I was 18 when they took my thyroid out and was told by my doctor it was a cure and all I would have to do is a take a tablet for the rest of my life. Being 18 and naive I believed him, did wonder why they hadn't done it before though! Now I know why!
Really think hard and research your choices, I have been through hell for 3 years since having mine removed!!
hey, thank you so much for your response, I would be 18 by the time my choice will have been made, my doctor has told me the exact same that i would have to take a tablet for the rest of my life, if you dont mind me asking, what has effected you for the past 3 years after the surgery?
The main thing is struggling to get the dose of tablets right.
If it's too low I suffer with depression, tired all the time! Cranky and miserable to be around. Luckily I have a good boyfriend who understands because he gets the brunt of it! Lol
I've had some hair loss, scattered bald patches on my head, as a 23 year old this has been the worse thing for me and everytime I discover a new one I get down for a while.
I have to monitor my weight a lot more! Find I gain weight quicker then I used too.
You have to find the right dose of medication that makes you feel like you again basically. And it's definitely not a quick process!
Remember everyone's different, you might be lucky and have no after effects.
If I had the choice again I would still get it removed even with these side effects. I just wanted my thyroid out of my body as it clearly wasn't working right and causing me a lot of problems! It was a relief when it was out!
I have been taking carbimozole for three years now and am back to my normal self. I made the decision to stay on it instead of rai reading on here I think I made the right decision, I have not had any side effects and only have a check up once a year. I suffered badly with TED but all is well now. I know my eyes will never look how they used to but I am happy with how I am. Don't make any rash decisions. Take care
Hi RhiannonC,
It's your body, health and life - do not let any doctor make you feel otherwise - and bully you to pick from only two solutions that you don't feel comfortable with, trust your own intuition and knowledge. I would get a second opinion from Dr S or Dr P. I have accompanied a friend to see Dr S and I'm thinking of contacting Dr P myself for advice - after reading his book my instinct tells me he would get me - contrary to my GP or many other specialists.
kind regards
Hi Rhiannon,
I'm in the same boat, trying to make that decision. The British Thyroid foundation website is helpful. I went to a support group session & it was nice to meet people in the same situation. All the best. HS
Really? That's crazy, there isn't any support groups near me so that's why I came on hear to find people in the same situations. Thank you, you too!
HI, I was also given the same ultimatum two years ago. I ended up having RAI as I saw there was no other alternative. 4 months after having RAI my T4 level dropped so low it was undetectable in blood tests. I felt terrible, like a total zombie and thought I was dying. I had to take 4 months off work but eventually started to feel better on quite a high dose of Levo. I eventually got back to feeling human but I have to admit I have never quite felt myself again, lacking energy, feeling tired more than before and getting frequent headaches. I keep going back to my GP but as my levels are normal they say there is nothing they can do. I am now looking into having private blood tests to see if there is anything they are missing. I think for many people they will feel fine on Levo but many don't and feel like they have to battle with the NHS to get anything done.
If I had my time again I would do some research about staying on Carbimazole long term, see if you can find any evidence that it does no harm to just stay on Carbimazole. I would do that as I know I felt fine on Carbimazole and my levels were very stable. I wish I had done my research and done that rather than having RAI, it has definitely changed my life. Hope that helps and good luck xxx
The results will be different for everyone. There are a lot of negative stories in this thread so I thought I would share a positive one. My brother had the Radioactive Iodine treatment 15 years ago. He went Hypo as you would expect but on 150mcg of Thyroxine he is fine with no symptoms. He has 2 young kids and a very high pressured job but copes better than most.
Hi Rhiannon, I don't know how much use I'll be but I'm in the exact same boat struggling to make the same decision. My gut instantly says no to surgery, largely because Graves' is autoimmune so the thyroid part is a symptom and not the cause....or how I understand it. Its a minefield of information and its hard not to feel lost. As far as i can see although Radioiodine and Surgery are options to be considered we need to consider making changes to our diet and lifestyle etc to see what can help, taking supplements too. I don't feel like anyone has really sat me down and explained things so that's what I'm going to ask of my endo at my next appointment at the end of the month. I'm also taking my mum to the appointment with me (despite being 29) because I need someone else who can try and take in the info and help me to ask the questions that will help. I hope you manage to reach the right decision for you xx
I'm similar. I had a subtotal 95% thyroidectomy 15 yrs ago & instantly felt better. 15 yrs on no medication but after having a baby my graves is back and I'm told I need a second thyroidectomy. My levels are 'normal' but I feel awful. RAI isn't an option as I won't be away from my baby but I also don't want surgery but I feel like I won't be better unless my thyroid is gone. It's such a tough decision to make but like you I'm just doing as much research as poss. The hard thing is everyone seems to have a different result 
xx
I have heard that there's a new way of treating Hyperthyroidism using Iodine therapy if I were you I would look into this. I have two friends who were Hyper and who's thyroid was irradiated because they didn't get on with the drugs. Both of these friends are now on Levothyroxine and not at all well and are getting nowhere with their GPs or Endos! So do your own research before having your thyroid destroyed is all I am saying!
